Well, aphter an eleven day phishing trip into the collective phlotsam, I did resurphace and much to the surprise oph the team of phixated neurologists, I was not ready for embalming, I could still read and write, but all the other philes were phickle – news @ phive – a phantom of his phormer selph. Yuck! Haph a century of memory and the skills of an inphant. Yuck – I phorgot, did I already say that?

Yesterday was the worst day in phive years. I decided to sign up phore web hosting with yahoo… Did I say it was the worst thing I did in phive years? I spent six hours on the telephone, mostly on hold, with customer support, who told me that wordpress is not supported by yahoo. And the little very nice helpers at apple pro care, won’t support anything except apple. Except somone should tell them the student blog on their web page is supported by wordpress.

Gosh. Bitterness is phoolish. Disappointment is human. I waited these many years to pick up a project and start writing again. I was so excited about a nice little bloggolla on the web. My own little turnip patch: carrots phrom carrot seeds, and everything wonderphull phore a pharm.

I cannot get wordpress to work on my own with binaryblue. I have worked harder than I have worked at anything in phive years. That would be a good sign. Except I think my trusty serphice dog and me just shud have a turnip pharm, because I cannot make anything work in the world.

There are lots of things I can do as an isolated person. I can read good books, I can write and I can exercise. I wanted to have a website to serialize my writing, to give it focus and to provide feedback that wasn’t space and time bound. I spent almost five years evaluating equipment, software,and web hosts. I looked for guided experience in accessing the right tools. Access is difficult for so many reasons: I need GUIDED EXPERIENCE – I have two service dogs now, ferry tickets to Seattle are expensive and I have no guarantee of reimbursement. Voc Rehab is correct: I have a college education. This gave me boxes to put things into, and boxes within boxes and taught me the names of boxes. The stuff that goes into the boxes is real knowledge and that has always come down to most of us through guided experience.

I won’t feel ashamed about requiring guided experience in my progress to useful activity. This is so very normal, it is beyond expression. My capacity to obtain this guided experience has changed. I am not a college student, I am a grown man at the age many men think of retiring. And I still want to find something to do with my life. My social abilities, my communicative abilities, my patience seem so fragmented. What difference would it make if I were around people like me – an ACCESS driver suggested the ARC retarded citizens group for me. I ihave known many people with downs syndrome or developmental disabilities, but I am not retarded.

Whenever my caregiver doesn’t like something I do: if I ask to have the dishes put away where I can find them, if I ask to be on time to my appointments, if I attempt to set boundaries, then she goes around Bainbridge and Poulsbo saying negative things about me. This triangulation is no different than what the Quakers would do, or my Kingston “friends”. Normally we call it gossip. I think sometimes people attempt to control each other by creating negative impressions about other people in the community. There is a difference between speaking in caring concern, and speaking in negative connotation. I don’t know my caregiver’s friends. I don’t want to be within her social circle and I don’t want to be cast in a negative light to people I do not know and have never met. My understanding is that I am entitled to feel safe in my care environment and that my care is on a confidential basis. That sense of safety is what confidentiality is about to me.

When I close my eyes and imagine where I would feel happy and safe, it is among a group of physically, intellectually and spiritually active people who live in a near subsistence environment. When I began traveling North and I was so very ill physically, and mentally, and emotionally exhausted from my accident, my surgeries and carrying the grants campaign for the children’s hospital and other projects, I imagined I was searching such a rural environment. In my mind, I imagined I was going back to my Quaker high school alma mater. Instead, I landed on Bainbridge. For a while, I was able to work on a Kingston farm when I was strong enough. I was very, very happy until the owner began to wear “the mask of someone who is familiar in all our lives”: a person who wants something from us more than they want our well being; who wants to control us for the sake of controlling more than they want to see the gifts of our contributions; who wants more and more because supposedly that is better and better – but it only feels worse and worse to the person who has become an object in relationship.

This life for which I have been looking is more than elusive, it is illusive. It is difficult to find and it is also imaginary. I think I can approximate it… like a calculus, I can come close to reach an accurate sum of the smallest parts all together; but I can not achieve an exact calculation. This is confusing: to hold a vision so strongly and clearly of who I can be, of how our world can be and to see what is and how it is; and even if I am not disappointed, everything seems so far away from me. We live in a world of material ownership: I bought my hardware… I bought my software… I bought a web host… This way, everyone is doing business well if they take my money, but give me as little as possible. Apple has a Pro Care program and they will help me get setup if I use i web (although the students on the Apple website use WordPress); Yahhoo has a setup screen in which WordPress is the only alternative web logging software (but after six hours via TTY on the telephone to Yahoo “customer service”, who repeatedly hangs up when I ask for reasonable accommodation, I am told that “this is a WordPress problem”). With a minor prestidigitation, I was easily fleeced of my money and left on my own to figure it out. This is the American way.

I go on the big boat from the island to Seattle to learn how to make my website from Nick at the Apple store. I take baby steps and then something clicks. It is discouraging and I get tired of looking like a grownup and barely being able to act like a baby. Cognitive time lapse: the reality most people live within – before my coma, I took my brain for granted, until the neurons were tangled like a mixed up switchboard – and it is so difficult to make some things make sense. Stevie Wonder said, “… seems so far away, because we’ve got so far to go.”

I am supposed to start swimming for physical therapy. I am so humiliated by the social work agency that I don’t want their help. They will give me a pass for one month, because “the pool is in limited supply.” I am trying to understand this: the parks department appoints the social service agency as gatekeeper for the disabled and indigent. They must by law, because they just built a new pool with federal moneys. And Helpline House says that they can only let someone into the pool so many times. I am trying to imagine how much water I use up, or how much of my dirt clogs the filters, or how much I distract the lifeguards while important people are drowning. This way I could see how their tickets are so limited in supply.

It is the same with the State program that provides my care. My COPES program. It took a court order to get them to accept me for service – I mean, why should they? You can’t see a brain injury, and if they don’t have to look at me, then maybe I could shrink wrap chicken parts for a living and then I would be okay – and you wouild think that would be the end of it.

Nooo. I call on the TTY. Tina hangs up. I call back and ask for reasonable accommodation. Tina says she is not going to let me ruin her day. I call back and ask for an interpreter. Tina says I have all the phone numbers I need. I call and ask for a supervisor. Tina hangs up, hangs up and hangs up. I aks Tina’s supervisor what kind of training she has had “I know how to answer calls and transfer someone”. The director of the unit, Mr. Early, tells me this is great training. Now I understand why deaf people say that it is natural to be deaf and not a disability. Americans think communication is a mechanical process. Like George Bush, you open your mouth and you will automatically make sense and communicate. When I call COPES and say I want to make a complaint to the State Human Rights Commission, or the US Department of Justice, they hang up on me. I suppose learning how to communicate with their clients would be ruining their day.

Judge Judy is yelling at someone for “being on welfare and taking advantage of the system”. We never think about the hundreds of thousands of beings who say they are making their living helping people. They are earning money, not making a living. If they were making a living, they would want to communicate with the people around them, not make them mad and say, “I work all day with people who don’t appreciate it… they don’t make any sense… then don’t know what they want… these sick people just act so phreeking sick… I know they don’t want help, because I have been trained to answser their calls and transfer them and they never make sense asking for anything…”

Franz Fanon wrote a book called The Wretched of the Earth. If I remember, the whole book mainly says, “If you put your foot on someone’s back, you will leave a footprint. If you push them down into the dirt, they will get dirt in their mouths. If your definition of wretched is someone with footprints on their back and dirt in their mouths, then these people are wretched.” But we all know that they weren’t born wretched babies. The question is, at what point did a child hold a gun to your head and plead to be made wretched.

It is the seamless violation (no pun intended), from the moment I attempt to walk in and I’m told that my service dog is not allowed, that at 2:00pm on Friday afternoon there is no manager available in the store (but when I offer to call the Police and file a harassment and discrimination report for interfering with the use of a service dog), lo and behold, Dan, just out of college and in from the Walla Walla store tells me he has an uncle who is disabled…

I remember my college weekends and the climbing trips to Mt. Shasts or Mt. Adams, Mt. Hood or Mt. Rainier that began with a foray to REI for last minute gear or stove fuel and then Safeway for bulk food. The last time I was in Safeway, the produce manager came up from behind me, grabbed my shoulder and told me I would have to leave because I had a dog (who incidentally, thought not required, is clearly marked as a medical alert service dog). I don’t know if it is better one week to be denied entrance altogether by REI and then lied to the next, or to be grabbed by the shoulder roughly from behind for using a living, medical assistive device that is better trained than 99% of Americans.

Next, I begin to coiunt my friends, and I wonder out of fear, ignorance, and avarice, which ones have lied to me in the past year displaying what we Quakers would now tolerantlly call Friendly quirks. It is more than disappointing, and more than the simple broken image of shattered nostalgia. It is the betrayal of a way of life that has become inconvenient.

I looked around. Typepad graduates suspisciously wear WordPress cap and gown. I have a lot to learn. Now my plan is maybe with a phree Yahoo or something, get up and running, and learn WordPress and transfer over when I can.

Not to do everything all at once. This is typical for me gimp-wise. I want to know how to make about page show, I want to make home page show… so many curphs so little centriphugal phorce…

Dear Dear Aword.com. I have recently had my caregiver help me place an order through Aword.com. As a legally disabled person under state and federal law I can tell you, as you already know, that the experience was difficult, confusing, humiliating, and not in conformance with federal law for accessible web pages.

I have received your email confirmations of our order. I will be tracking it closely, and publicly reporting on my order’s progress. I will also be writing a review for the disabled regarding the manner in which, as you also know, you have deliberately designed your site to be misleading, and inaccessible. I’m sorry, did you say that you do have a TTY/TDD contact number?

I had read the advertising, and again, as you know, if it wasn’t so difficult to assemble such a diverse order, then I would cancel my order and submit it through other companies. But, I think that is your purpose and you have succeeded: people swallow their pride, and their belief in what they think are fair business practices for a small modicum of convenience.

But really, what kind of business legacy is that; and exactly how many repeat customers do you think you will have? Sincerely, zword.com

Best yet, in the simple gimp, but true department: my shrink does not believe that when our will to create is strong enough, everything we needs comes to us from the (ok, excuse my misty eyed metaphysics) bounty of the universe. He says no. I says yes.

Then along comes ‘le patron’ to ask me to make my list. Which I do ‘toute suite’. And I go back to said shrink who thinks I am a hysteric who has hypnotized reality, or better yet, just a decrpit old man whose bones someone wants to jump. phphphit. Is all I can say.

I called over his dog who always attends through our sessions with us – I gues it is therapy for my service dog – a kind of 2 pher 1. “Does you dog know how to sit?” I query. “No” my shrink replies “In all the years we’ve had her, I’ve never been able to get her to sit”

“Oic… come here, dog, and SIT.” I say, putting my finger on the floor. Dog sits. Point made. Gimps one. Shinks none.